After attending Jordan World Circus, thanks to the Starlight Children's Foundation, @ the Puyallup Fairgrounds...Summer LOVED the ponies, elephants, and especially the high flying acrobatic Ariel princesses (her favorite...she kept saying "printhess, ahh, ahh, ahh (like Ariel's singing) 3-12-2011

Thursday, February 17, 2011

Summer's new wheels

Summer's new wheels...

Summer has gotten so big (she's now over 24 lbs.!) that she is just getting too heavy to carry. She still doesn't walk or crawl, and also has a hard time with the lack of support a stroller gives. After a chat with the therapists, they suggested we go forward with ordering a wheel chair. Summer is turning 3 in July, graduating from the birth to 3 program, and starting preschool in the Fall. The school is about 15-20 minutes away, so she will have to ride a bus :( The bus drivers/teachers are not allowed to carry kids to or from the bus and the class, so she will need a way to be transported. On one hand, I have a hard with this happening so soon. But on the other hand, I have to admit it will be nice to send Summer to preschool and Morgan to Kindergarten the same year....maybe I will actually have some free time? haha.

So...a wheelchair it is.

This is actually called a Kid cart. I personally feel it is simply a cute name for a kiddie wheelchair....trying to make parents like myself feel okay about it all. :p This is a temporary loaner from the therapy center until we can get Summer her own customized chair ordered. I had a hard time coming to grips with the whole thing, but I know in the long run, it will be better for all of us...
Well, I have to say one thing...Summer sure seems to love it!
Summer gets upset when we take her out of the chair...Morgan wheeled her all around the house, parked her, and read her stories :)



We used the chair today for the first time at swimming. Summer loves the height and it is really easy to push and manouver. My hubby and I have always been too tall for stroller handles, this one is the perfect height :) It is a lot heavier than a stroller, but folds up fairly compact. I'm sure the lady in the parking lot enjoyed a good chuckle at me wrestling with it when I was packing up though.

Wednesday, February 16, 2011

Lots of changes!

Medically, Summer is doing fantastic! She now only has to go to her GI clinic appt. at Children's every 8 weeks! When she was a baby, we were there every week...this is a nice change :) At her most recent appt. at the beginning of Feb., Summer had gained well over a pound (she's now 24 lbs.6 ounces!), and had grown 3 centimeters. She is getting very tall and hard to carry. She still doesn't walk or crawl, so needless to say, our backs are feeling it. Summer's labs still continue to look great. Her liver function is great, and she is maintaining normal levels in all the areas they monitor. At this point, she is past the halfway mark for her predicted life expectancy! This prediction, of course, was made during her first bowel surgery at only 2 lbs. 11 ounces...they assumed she would be IV dependant, have all the side affects that would come from that, and need a bowel AND liver transplant. She is still NOT on the transplant list because her 10% she had left, is able to absorb enough nutrients to keep her growing, and still has NO sign of liver disease! Since she grew so much, the nutritionist also ok'd her to cut back on her feeding tube another two hours per day. She now has 8 hours off during the day, freeing her to try and be a little more mobile. She still doesn't consume food, but puts things in her mouth to taste them, and drinks water fairly well. Her gag reflex has gotten less sensitive, so I'm hoping she can start making progress in that department soon too...
Summer also had her first trip to the dentist yesterday. She did alot better than I thought she would :) Since she was born so premature, her teeth have grown in with very little hard enamel. She was also on TPN (her IV nutrition) for so long, it may have weakened them too. Despite these factors, her teeth looked pretty good. They are yellow and have some tarter build up, but this is to be expected. Good, strong enamel covers the layer under it, which is yellow, and makes our teeth look white. They have also noticed that kids who are G-tube fed, tend to have more tarter build up. So, we have to make sure and give her extra flouride to help combat cavities, which she may be more prone to.
When looking through the last couple of month's pictures, I was amazed at how many changes have been made in such a short time...no wonder I'm busier than ever now!
Summer has started a very busy schedule of therapy...Occupational (physical) and Speech every Tues., playgroup (like a structured preschool class), and aqua-therapy every Thurs. She loves the play time at the end of class...they have a couple of really cool swings :)


video

Fun, fun, fun! Summer loved her first day of swimmming therapy in January!

I caught her in the act...who gave her a pen anyway???

A budding artist...
Morgan's preschool class took a field trip to the firestation at the beginning of Feb.
Summer LOVED the fire truck!
Though content here, she was not at all happy about being removed from the fire truck...she wailed for the remainder of our tour.

Summer has discovered rolling can take her places :) She loves our hardwoods and laminate flooring. In fact, she will point at the kitchen floor and say "jumpin", when she wants to play on the floor. She scoots herself with her feet while on her back, rolls, and kicks "fast" as she calls it.

She often gets stuck in unusual places now...

video
A trip to the zoo on a day out of school. Summer and I were lagging behind and were rewarded with a walrus feeding :)

Summer's legs and foot muscles have always been very tight. Being a preemie, she is in danger of getting something called constrictures in her legs, hips and feet if the muscles are not stretched out, kept limber and used. She has been receiving therapy to help with this, but she is still so tight, it is keeping her from sitting, crawling, and walking. The therapists still feel like she will probably be able to walk someday, but her future is still uncertain. In order to give her the best chance possible, the early intervention in very important. In January, she got fitted for leg braces and foot splints. She has to wear the leg braces for 3-4 hours per day and the foot splints every day, all day. She even has shoes that fit over them so if/when she starts trying to walk, she will be used to the feel and weight.

Every new challenge brings another smile to her face. :)
Summer checking out her new legs

Look at Summer...she has gotten so tall.

Little drama queen...
Little Tom was trying to get her stand...she wasn't going for it. When she cries now, she starts crying, clasps her hand over her mouth, and in a very pathetic voice, says "SAD".

Summer seems pretty darn happy despite her double "casted" legs!


She actually flattens her feet with all her gear on...I guess she really has no choice ;)
She has been wearing the splints for about a month now and we have already noticed a HUGE difference in her legs and feet :)

Summer's first real haircut. Since she still hangs out on her back alot, she has a spot that rubs the hair short. Other parts of her hair have gotten long around it and it was starting to look like a mullet. So, it had to go.

Riding a duckie at the park...she loves to say "Wheeee"...I have to make sure she's balanced and take the picture quick....before she falls off. Yes, she has fallen off things bofore with this tecnique :( Bad, bad, bad, paparazzi mom!

Summer's Cat in the Hat shirt...she loves him :)

New shoes! I got these shoes at the Orthotics center. They are huge on her feet, but not when she has her orthotic foot splints on. They even have a squeeker in the heel.

Reading with dad and Morgan. Summer's new favorite books are the fun rhyming Dr. Seuss stories....especially "The Cat in the Hat". She also loves the cartoon Cat in the Hat show on PBS. She calls it "Hat" or "Cat" when she wants to watch it :)

Little miss on her throne at playgroup. She tends to push her hips forward alot and slide right out of every seat she is in, so the therapists are trying to add some props to the seat to help her stay in it.
She's getting the little stuffed monkey ready for the
"Monkeys jumping on the bed" song...her favorite :)

...and bonked his head! "Bonk!" Summer says as she bonks her own head with the monkey, followed by "owwwwch"... :)

"oh, poor monkey...give him a hug"

Popping bubbles!

Again at swim class. Last week she actually grabbed onto the wall and played "peek-a-boo" with me :) Holding onto things can still be a bit challenging for her...



The ducky quacked her up! he he he

Stretching a little far! It's a good thing for Summer that she now has an 8 hour time period every day that she can be un-hooked from her feeding tube! ...it tends to restrict her at times...I have even heard her yelling at it, "BACK. PACK!" haha.